[1] Periodically, I find myself put on listservs delivering information to my inbox that someone thinks I should not be without. Recently I found myself on a Vatican News listserv. One morning last March, I opened to a headline announcing that after 1,500 years the Vatican had named seven new deadly sins. To the usual list of capital offenses—adultery, murder, blasphemy— the Vatican apparently added (among other offenses) “drug dealing, pollution, being obscenely rich and genetic engineering.” In explaining the additions, the Vatican official in charge of the office that oversees such things argued that we must take account of “new sins which have appeared on the horizon of humanity as a corollary of the unstoppable process of globalization.”[1]
[2] I couldn’t help but think about that news item as I reflected on today’s discussion. Setting aside the interesting question of how different religious communities formulate and articulate moral positions on pressing issues of the day, I was struck, in contrast to the Vatican’s approach, by what seemed to me to be an underlying assumption in your collective efforts to construct a Lutheran framework for genetics: although we are at a new threshold in our capacities to understand and intervene into life on the molecular level, although we are continually introduced to new forms of medical and social power—and thus new forms of temptation—what appear to be radically novel moral challenges often lead us back to ancient and enduring moral and religious questions, questions about healing and salvation, suffering and justice; power, reason and finitude, and about the relationship of humanity to other aspects of creation.
[3] In this spirit, I would like to highlight five themes that run through the presentations, inviting further reflection:
1. The relationship between medicine, biotechnology and health
[4] In his paper, “Framing Stem Cell Arguments,” Ted Peters does a nice job of laying out the opposing ethical frameworks in the debate over stem cell research and defending the “future wholeness” or “medical benefits” framework on philosophical and theological grounds. He makes a compelling case that Christians should be motivated by the concern to relieve human suffering and to advance human flourishing: “where the number of persons now living and yet to be born whose lives could be saved or improved by regenerative medicine number in the millions, perhaps hundreds of millions even billions,” reluctance or failure to pursue promising avenues for new therapies risks violating the canons of medical ethics or, put theologically, failing the demands of neighbor-love.[2] In this framework, relieving suffering, lengthening life with good quality, and advancing human flourishing are self-evident values. They are not the only values that come into play, but they are the determinative values.
[5] On the face of it, it is hard to argue with the position that Christians should support investments in medical technologies that are likely to significantly improve human life and reduce human suffering for this and future generations. But as one member of this group pointed out, it is important to separate the evidence from the hype surrounding regenerative medicine. There is little doubt that stem cell research has the potential to revolutionize medicine. However, it is by no means certain when, or in some cases if, stem cell research will yield the groundbreaking therapeutic advances its supporters’ promise – and on which so much of Ted Peters’ case rests. Moreover, “medical benefits” arguments often obscure the complex and imperfect relationship between medicine and health. The United States health care system illustrates well the principle that the highest investments in health care technologies do not necessarily result in the best overall health, if measured by indicators such as infant mortality. The most significant factors in determining health continue to be non-medical, e.g. lifestyle, sanitation, nutrition, and environmental quality. Even when we focus on individual patients within the medical system, our experience with end of life care suggests that more intervention does not necessarily result in better care—people die whole without being cured and people are cured without being healed.
[6] To recognize that health and healing have dimensions beyond medicine (social, emotional, environmental, spiritual, cultural) does not negate the place of genetic or regenerative therapies in health care, but it does temper the claims we want to make about the promise of any medical intervention. It also points us beyond the potential of a particular therapy or intervention to a critical appraisal of the social, economic and cultural environment in which it will be introduced and implemented. For example, Peters identifies “lengthening our longevity” as one of the likely benefits of regenerative medicine. As a graying nation, we are already experiencing significant social changes and challenges to our conception of biological age. But whether or not we will come to view life extension as a human benefit will depend upon how we choose to construct and sustain a radically different conception of a “good life” or a “normal life span.” It will also depend upon the conditions under which individuals contribute to and participate in valued activities and relationships across a whole life. The experience of many long-term widows today suggests that even if regenerative medicine succeeds in extending life significantly in good physical condition, without the continuation of robust familial and social networks, we will have achieved at best a mixed blessing.
[7] In Richard Perry’s paper, the question “What is the relationship between medicine and health?” gives way to an even more interesting theological question: “What is the relationship between medicine, healing and salvation?”[3] Drawing on traditions in African American Christianity as retrieved by James Evans, he places the art of healing squarely within the word and the practices of the community of faith, where medicine is administered in the context of prayer and ritual. Here the most important thing is to understand what it means, for those who believe that God is the source and sustainer of our lives, to be made whole. In the context of genetic and regenerative therapies, his cautionary note reminds us of the extent to which religious conceptions of reality frame the integration of new therapies as promise or peril. What emerging genetic technologies imply for health and healing for African American Christians is not only a sociological question (requiring attention to their place in a society marked by a history of racial and economic inequality) but a theological and spiritual one (requiring attention to their meaning as instruments of divine love and communion).
2. The relationship between nature and human agency
[8] Lee Silver, a molecular biologist at Princeton, has called the advent of in vitro fertilization “a singular moment in human evolution,” a moment in which it became possible “in a very literal sense …to hold the future of our species in our own hands.”[4]
Although developed to treat infertility, IVF opens up new avenues for understanding human embryonic development and thus new, seemingly unlimited, possibilities for directing its course. Right now, “reprogenetic intervention” largely takes the form of prevention; i.e., we use genetic information to avoid reproduction, guide implantation in the case of pre-implantation genetic diagnosis, or prevent a pregnancy from going to term. However, as technologies advance, our powers are likely to expand, making genetic engineering a reality. It is not surprising that genetic advances raise anxieties, often phrased in terms of warnings against “playing God.” Historical memory of the misuses of genetic knowledge through eugenics programs here in the United States and elsewhere run deep in our collective consciousness, however much—as Richard Perry points out—we may experience that history differently depending on our social location. But anxieties also arise from the perception that by “becoming our own experimental material,” we recast our relationship to ourselves and threaten right relationship between creature and Creator within a sacred cosmos.
[9] Not long ago, I participated in an interdisciplinary, interreligious project exploring how religious communities either ratify or reinterpret conceptions of nature and “the natural” in the face of technological innovations. I was a member of a small working group on in vitro fertilization made up of anthropologists and theologians. Considering a variety of religious traditions, we examined the testimony of religious believers as well as the public positions on assisted reproduction taken by various religious bodies. I came away from the study with a new appreciation for two things. The first is the absolute centrality of theological questions for religious believers as they negotiate new technologies. We found ample ground for warning that policy makers and practitioners ignore theological questions only at their peril, questions such as: What are the spiritual meanings of infertility? In what way is the divine active in daily life, and how can its presence best be acknowledged and respected? What is the divine will for me, or the shape of a holy path? In what way does the divine or the power of the cosmos inhabit or use persons and their bodies?[5] One visible way in which we saw religious concerns bound up in individuals’ relationships to technology was the practice mentioned in ethnographic studies of assisted reproductive technologies (ART) around the world of incorporating religious rituals into treatment, e.g., asking a religious official to bless embryos before uterine transfer. This process of incorporation was not uncommon, especially in cases where patients sought treatment through assisted reproduction against the resistance of their cultural or religious traditions.
[10] The second thing I came to appreciate was the sense in which “[r]eligious communities tend to naturalize technology, incorporating it pragmatically but artfully into a religious vision of the world that has a definite place for nature-as-sacred-creation.”[6] Individual religious believers, in particular, often selectively accommodate new technologies in the service of valued ends integral to the beliefs, practices or identity of their religious community. It is not unusual to see religious believers—and sometimes religious leaders—embrace assisted reproduction under the rubric of a religious vocation to parenthood. Thus, it is worth bearing in mind that when religious people are deciding how to react to ARTs [or in this case genetic technologies] they are not typically deciding between flouting nature and uncritically obeying it. Rather, they are drawing on traditional understandings of nature—making use of precedents and analogies that already have meaning within their traditions—in order to give meaning and place to the new technologies, to whatever degree they may embrace them. . . . Each acceptance (and each thoughtful rejection) is a transformation of the tradition’s view of nature, inevitably, but on the tradition’s own terms. There is development but rarely a sharp discontinuity.[7]
[11] Genetics and Faith, by the ELCA Task Force on Genetics, illustrates well this practice of “naturalizing technology.” For example, its discussion of the use of genetic therapies for enhancement, i.e., for extending or improving life rather than treating disease, describes a middle path between pessimism (the view that enhancement genetics will be a dangerous instrument of hubris) and utopianism (the view that enhancement represents an unqualified contribution to human development). The middle path entertains the possibility of “human technology guided by the ethics of Jesus”:
[12] When genetic technology upholds the dignity of the individual, it participates in God. When it respects the self-determination of the individual, it participates in God. When it meets the basic needs of all people, it participates in God. When it enables humans to flourish in times of environmental change, it participates in God.[8]
[13] Christians who adopt this middle path incorporate genetic technologies into a certain world view, i.e., one in which “God acts in creation, redemption, grace, incarnation, and transfiguration,” and into a distinct conception of Christian discipleship in which technologies, guided by the power of Jesus, can potentially become worldly instruments of God’s healing and reconciling mission. Whether or not one is persuaded that enhancement genetic engineering as such is compatible with Christian understandings of the role of medicine or that it is wise to pursue in light of current health care priorities, it is important to be self-conscious about what is at stake in this subtle process of “pragmatic incorporation” in the context of genetic technologies. In accepting or rejecting particular technologies, which beliefs about human agency and divine providence are we reaffirming? Which are we refashioning?
3. Grounding Human Dignity
[14] Peters characterizes the Vatican’s position on respect for embryonic life, i.e., that even the earliest human embryo is assumed to possesses a soul and therefore to be a person, as reliant on an autonomous ontology of the person. He contrasts this position with Paul Jersild’s relational framework: “We become who we are as human beings in relation to God and our fellow human beings.” Whatever we make of Vatican arguments concerning personhood, it is true that commitments about the relational nature of the self figuring prominently in Roman Catholic social ethics recede in the so called “life questions,” e.g. in arguments about the morality of abortion or human embryonic research. Jersild’s framework opens up a theological alternative to the view of ensoulment in which we attempt to identify the point at which a developing embryo possesses sufficient human attributes or sufficient organization or uniqueness to be said to participate as human in the life of the Divine. Here it is the “eternal relationship grounding human dignity, a relationship established even before we were formed by calling us toward the divine” that foregrounds both our human dignity and our human vocation.[9]
[15] In the context of debates over stem cell research, understanding the dignity of the person in this way both allows and constrains: it allows in the sense that, as beings whose dignity is established from the very outset in social relation, we may be called “by God in many ways and for many purposes”; it constrains to the extent that the relationship of the developing fetus to its mother establishes boundaries for ethical treatment. At the end of the day, I am convinced that something like Jersild’s joining of a gradualist position (one that allows distinctions to be made concerning the nature of respect for human life during the course of embryonic and fetal development, such that there is “an increasing recognition of moral obligation toward prenatal life as the development proceeds from a microscopic, non-sentient state to a recognizable member of the human family”) with a relational ontology (such that ethical deliberation begins with “person-in-relationship”) is needed to capture the central moral question of stem cell research for many religious believers: What is the nature of our obligation to human life as it develops?[10]
[16] The only way to have a concept of “respect for embryonic human life” that is both meaningful and allows for exploration into the potential of human embryonic stem cell research under some circumstances (a position motivated for many religious people by a feeling of religious as well as ethical obligation) is to set the question of moral personhood within our call to being—in relation—with and by the divine. The enduring question, however, is how we are to understand exactly what is distinctive about our human relationship with the divine, what it means to be a certain kind of creature, if respect for human dignity is to turn principally on our having been called and sustained in relationship with God.
4. The relationship between the individual and the community
[17] One thing that distinguishes the debate over stem cell research from the abortion debate (as much as they overlap) is that the appeal to pursue this research has come in very personal terms. When my students enter the classroom and see photographs of Michael J Fox, Ronald Reagan, and Christopher Reeves on the computer screen, they know that “ethical issues in stem cell research” is the topic of the day. For many Americans, these public figures are the face of stem cell research and the debate over whether or not to go ahead with the research is caught up in empathy for their very palpable sufferings and disabilities. Unlike the typical argument over the morality of abortion, most of us can think our way into needing the sort of treatment promised by stem cell research or wanting it for a loved one.
[18] However, in many arguments for developing genetic and regenerative therapies, the impulse toward compassion drowns out all other values, and individual rights and needs are elevated as though they can be pursued in isolation from any other competing moral considerations or societal obligations. Flowing from a relational anthropology, a Christian ethic resists false or misleading antagonisms between the individual and the community. A commitment to the common good recognizes the indivisibility of rights and responsibilities and situates the demands of neighbor-love within the duty to create and sustain a just social order. One way to think concretely and constructively about the nature and scope of those demands within the common good is to look at how we ratify or transform existing relationships as we determine health care priorities and invest in particular therapies over others, especially high tech, high demand therapies. From the perspective of the common good, the critical questions for emerging genetic and regenerative therapies are: Who are they likely to benefit? What norms, ends and values will control our decisions? Whose voices will be heard?
[19] Audrey Chapman, a bioethicist formerly with the American Association for the Advancement of Science, argues that the answers will be found in taking into account the interplay of four factors: long-standing patterns of inequalities of access to health care; a non-existent system of universal health care in the United States; a projected scarcity of the availability of genetic services relative to demand; and the likely high cost of such interventions. Chapman notes some well documented facts about the current US health care system:
[20] Problems in obtaining access to health care are unfairly distributed throughout our society. Blacks, Hispanics, and other minorities tend to receive lower quality health care than whites do . . . as a result of lower incomes, inadequate insurance coverage, and the absence of doctors in their areas of residence. Minorities are far more likely to be uninsured as compared to whites: minorities comprised 46 percent of the uninsured in 2000 although these groups represented only 24 percent of the United States population. In 2001, 37.7% of the uninsured were Hispanic and 20.2% African American, compared to 14% who were white.”[11]
[21] She cites a report issued by the Institute of Medicine (IOM) in 2003 to argue that a systemic “therapeutic discrimination” affects the health care that minorities receive. IOM reviewed 100 studies conducted over the past decade, concluding that “racial and ethnic minorities in the United States receive notably lower-quality health care, even when they have the same incomes, insurance coverage, and medical conditions as whites.”[12] The differences were especially significant for high technology interventions, such as organ transplants and open heart surgery. The IOM report attributes the disparities to subtle racial biases, the nature of health care facilities available in specific geographic areas, and lower rates of long-term relationships with providers.[13] An earlier IOM study, The Unequal Burden of Cancer, raised similar concerns about inequities in research priorities. It concluded that NIH funding for research targeting minority and medically-underserved populations was both inadequate and unequal in comparison to research targeting non-minority populations.[14]
[22] Considering these findings, Chapman argues, it is safe to assume that current inequities in access to health care, particularly high technology interventions, will likely operate with respect to genetic and regenerative services. High demand genetic therapies are likely to be costly and not universally available. Even if universal health coverage were to be adopted in the United States, underwriting access to some forms of genetic services (e.g., gene therapy for muscular dystrophy) current practice suggests that “the very groups who currently lack access to medical care, the poor and ethnic and racial minorities, are likely to still be disadvantaged.”[15] In addition, panelists at a recent event sponsored by the New York Stem Cell Foundation warned that the first stem cell therapies are not only going to be very expensive but medical breakthroughs may well encourage people to avoid addressing risky behaviors such as smoking or inactivity that are the most cost-effective steps for improving overall public health.[16]
[23] In order to flesh out what it means to assess genetic advances in light of the common good, Genetics and Faith draws on four principles already affirmed in ELCA social statements on issues such as environmental integrity and economic justice: sufficiency, requiring effort to meet basic needs for all people; sustainability, the obligation to preserve acceptable quality of life for future generations as well as present generations; participation, the responsibility to consider the interests of all members of the community; and solidarity, the call to stand with those whose human dignity is in any way threatened or assaulted.[17] Although the study document does not develop a process for bringing these principles to bear on public and private decisions concerning investments in genetic and regenerative medicine—it leaves unspecified the form religious engagement might take in developing appropriate methods for assessing the socioeconomic impact of particular biotechnologies—it rightly places questions such as equity and access at the heart of any assessment of the benefits and burdens of new developments in biotechnology.
[24] Principles such as solidarity and participation not only call us to challenge existing patterns of marginalization within health care, and to question arguments for introducing new biotechnologies that ignore glaring deficiencies in the provision of basic health care, but they also call us to reflect carefully on the way in which new technologies and practices contribute to shaping the fundamental character of communities and societies. If genetic medicine follows the patterns observable in assisted reproduction, its development and application will be governed at least as much by the largely unquestioned desires of the affluent for “genetic advantage” than by any collective aspirations for improved general health. Even more than the potential to create new classes of “gen-rich” and “gen-poor,” the advent of genetic engineering uproots fundamental assumptions about the meaning of “health,” “disease,” and “normality.”
[25] The power to intervene to prevent or ameliorate a range of genetically-related conditions could generate a new sense of obligation: if it is possible to avoid bringing a “genetically compromised” child into the world, perhaps it is obligatory. Most of us believe that preventing genetically-related disease is a prima facie good. But a Christian perspective prompts us to consider carefully what sort of people we may become through “genetic progress.” Will we continue to be a people who know how to welcome those with disabilities or to accept disease, imperfection and disability as part and parcel of our creaturely existence? The test case today is Down Syndrome. In the wake of widespread use of prenatal testing, the vast majority of pregnancies with a positive diagnosis are terminated. The question for Christians is: What do we lose when we win the battle against a condition such as Down Syndrome? One doesn’t have to read very far into the work of Jean Vanier or Henri Nouwen to wonder what it might mean to be a society without Down Syndrome.
5. The place of theological warrants in policy debates
[26] The final theme to highlight is the much contested question: Given our pluralistic society, how should religious communities participate in debates over public policy? There are well known disagreements in Christian ethics today between “sectarians,” who argue that faith communities should not attempt to speak to a secular or pluralistic society on its own terms but rather strive to be exemplary communities, and “transformationists,” who argue that religious communities must engage the world in an accessible language in order to bring desired values and neglected questions to the surface. The differences between these “camps” turn on a variety of underlying commitments about the nature of moral knowledge, the relationship of reason and revelation, and the juxtaposition of kingdom, state, and civil society.
[27] It seems to me that Genetics and Faith both struggles with and negotiates this delicate tension of witness and respect for pluralism. In articulating its moral framework, commonly shared principles are continually refracted through the lens of Christian beliefs and images. The challenge long term, of course, will be to answer the question: What will constitute a distinctively Lutheran witness in debates over issues of genetic research and therapy? For some religious communities, positing moral absolutes becomes a kind of short-hand for distinctiveness—a strategy that may be effective in some way but which relies on a truncated and ultimately false account of religious tradition. Genetics and Faith rightly resists such a collapse, but it leaves unanswered the question of how identity for ELCA will be communicated in its public witness.
[28] I was particularly struck by Genetics and Faith’s presentation of ethical deliberation across community boundaries as a dimension of what it means to take responsibility for new forms of power. Too often, the form of engagement for religious communities with science or public policy is monologue rather than dialogue. We have witnessed many versions of “line-drawing,” “stop sign raising” that are well intentioned and thought to be necessary to defend threatened values. I raised an example of that posture in my own tradition at the beginning. The Vatican is to be praised for extending the notion of “deadly sin” to include global relations and structural patterns of inequality. However, to label “genetic engineering” a sin without critical discernment and careful discrimination is both unhelpful and risks impoverishing the notion of sin. The result of monologue over dialogue approaches to moral debate is often that the churches’ most pronounced role is to answer questions no one has asked. The effort ELCA is engaged in points the way to what a reasoned religious approach might look like, one that struggles to work out in a new way the relationship between creativity and fidelity, moral innovation and obedience in terms of an integral Lutheran tradition.
[29] One of the most important questions for Christian ethics as its faces the repro-genetic revolution is how best to tap the power of religious communities to motivate and animate action for social transformation going forward. There is value but also risk to a primarily watch guard posture. Religious concerns for safeguarding human dignity have maintained a level of caution in human embryo research we are unlikely to have seen otherwise. At the same time, identification of religious morality with a narrow set of moral positions, however important, blunts the role of faith communities in shaping the development and application of genetic technologies in areas where religious perspectives could bring necessary counter-values and alternatives to our current ethos, an ethos where the questions of power, access and responsibility that have identified as central to a Lutheran ethics are often submerged under the logic of market-driven research. Roman Catholic bioethicist Lisa Cahill has observed that “Christian theological bioethics is increasingly making distributive justice in health care resource allocation, especially in the form of affirmative action on behalf of historically excluded populations, its priority.”[18] Indeed, contra those who argue that theology is marginal to contemporary bioethics, she argues that an active commitment to justice is and should be the way theology counters most effectively “the equally thick cultural traditions of modern science and market capitalism:”[19]
[30] Cahill argues that traditions of global social activism alive in Christian churches provide a base for envisioning and actualizing multilateral cooperation around programs and policies for ensuring access to health care and an equitable share of the benefits of scientific progress in areas such as human genetics. The distinctive contribution of the churches is the promise of international strategic alliances that take their energy from what could be called the identification of “commonalities between different resistances to oppression,”[20] in this case, common resistance to the force of consolidated market and scientific ideologies. It is worth reflecting together on her challenge: “Theological bioethics must take shape in broad, inclusive, participatory, and ultimately global networks that bear out the conviction that more just practices are not only obligatory but a ‘possible impossibility.’”[21]
Conclusion
[31] No short summary could capture the rich and evolving process of moral discernment reflected in Genetics and Faith and in our discussion today. The five themes I identified and the questions I raised are admittedly more suggestive than exhaustive. However, I want to express my great appreciation for the framework of conversation, prayer, and action in which the discussion of genetic technologies unfolds in the ELCA study. Genetics and Faith invites profound respect for moral uncertainty and complexity and finds a legitimate place for debate and disagreement within a prayerful process of communal discernment. It also recognizes the limits of the various forms of moral knowledge we bring to bear and the need to engage science intelligently and critically. Thus, it calls for discernment teams that include scientists, pastors, and theologians. Among its greatest strengths is the awareness that we need to bring as much light as possible on these complex moral problems before we declare them settled for a living tradition. I was reminded more than once of the admonition attributed to Bernard of Clairvaux: “If you wish to see, Listen.”
Endnotes
[1] Quote attributed to Bishop Gianfranco Girotti, head of the Apostolic Penitentiary; available at http://www.foxnews.com/story/0,2933,336330,00.html. Accessed February 24, 2009.
[2] Ted Peters, “Framing Stem Cell Arguments,” paragraph 17.
[3] Richard J. Perry, Jr. “Is There Really a Relationship Between Genetics and Social Location?”
[4] Lee M. Silver, Remaking Eden: Cloning and beyond in a Brave New World (New York: Avon Books, 1997), 75.
[5] Christina Traina, Eugenia Georges, Marcia Inhorn, Susan Kahn, and Maura Ryan, “Compatible Contradictions: Religion and the Naturalization of Assisted Reproduction,” Altering Nature, Volume II B. Andrew Lustig, Baruch A. Brody, and Gerald P. McKenny, eds., (Berlin: Springer, 2008), 19.
[6] Ibid.
[7] Ibid. 20.
[8] Genetics and Faith: Power, Choice and Responsibility, Study of the Evangelical Lutheran Church in America Task Force on Genetics (Minneapolis: Augsburg Fortress, 2008), 105.
[9] Peters, manuscript page 17.
[10] Peters, manuscript page 18.
[11] Audrey Chapman, “Should We Design Our Descendants?” Journal of the Society of Christian Ethics 23/2 (Fall/Winter 2003): 199-223, at 210.
[12] See Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, Brian D. Smedley, Adrienne Y. Stith, and Alan R. Nelson, eds. (Washington: National Academies Press, 2003); as quoted in Chapman, 211.
[13] Chapman, 211.
[14] The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved, M. Alfred Haynes and Brian D. Smedley, eds. (Washington: National Academies Press, 1999).
[15] Chapman, 211.
[16] John Timmer, “Has Change Come to Biology? Stem Cell Research under Obama,” Ars Technica, available at http://arstechnica.com/science/news/2009/02.
[17] Genetics and Faith, pp. 30, 37.
[18] Lisa Sowle Cahill, “Bioethics, Theology, and Social Change,” Journal of Religious Ethics 31 (Winter 2003) 363-398.
[19] Ibid. 363.
[20] Fiona Flew, et.al., “Local Feminisms, Global Futures,” Women’s Studies International Forum 22 (July 1999) 393-403 at 393.
[21] Ibid. 391.